Kat, your post blew me away. Please read this and then reread it to take it all in...
This is to all who expressed concern re Herceptin and ECHO and EF etc...
I had a MUGA (w/the radioactive dye) to begin w/ in '95 at initial dx, before Adria. Since I've been on H (beginning in '98) I got ECHOs ev e mnths. Standard practice. At a certain point the onc moved my ECHOS to ev 6 mnths. As of '06, after all these yrs, they moved me to annually. I wouldn't want to be using radioactive dye any more than I have to (ie contrast w/CT scans).
I began w/EF of 65 and am now 50. My cardiol says slightly unreliable, could be 5% more, meaning 55%. He's not worried from his pt of view. I have high bld press, from before bc, and am on Coreg twice a day + Vasotec + hydrochlorthiazide (for swollen ankles, which my mother and great aunts had just like that. No bc or chemo.) Just genetic. My cardiol checks me ev 6 mnths and sometimes has to tweak my meds to keep my BP normal. The chemo nurses take my bld press ev 3 wks and I take specific note. If I am creeping up there, they retake it before I leave, to see if there is a diff. If I am a bit high, they tell me to watch it, which I take as a loving warning and I follow up w/my cardiol.
I do get out of breath from walking sometimes. I have had a small peri cardial effussion since Taxotere that has remained stable and is not a concern to my cardiol or my oncs. (I had a pleural effusion, fluid around my lungs, when on Taxotere, but it eventually dissipated.) They don't believe the fluid around my heart will ever go away, but keep an eye on it to be sure it stays stable, small, or moderate.
My NY nutritional oncologist who is a supplement guru has put me on PERFUSIA, which is Argenine. The bottle says take 6 a day (3 + 3). Guru says take 1, and don't worry about EF. When I called him with the last ECHO a few wks ago, concerned about my 50, he told me I could double my Perfusia. so I am doing that.
I take co-enzyme Q10 - 150 X2 a day. I take Omega 3, and a bunch of other stuff I've listed in a 6/30 thread TO "SUPPLEMENT" OR WAIT, for those interested. I tried to give dosages and the reason for taking each. I will be happy to answer any addl questions, of course.
I get a copy of every single report for ev single test I have and save them in a file. I compare #s when I get home and question each slightest change. That's how I found my liver mets, w/"slightly elevated liver enzymes -- I wouldn't worry about it" 3 X in a row (over 6 mnths of comprehensive bld tests ev 3 mnths). I asked for a sono. Which led to a CT scan, which led to a liver biopsy...
We must be our own proactive case worker! I question everything. I keep a list of my questions, cause I get caught up in the moment, stuck on something the doc says, or that my brain wanders to, and my thought processes just freeze. I am consistently told that I am not being a bother, but that I am smart to ask questions. I want to be clear on every little point. I reiterate what written orders are, for H, for CT scans, etc. Mistakes are consistenly made. They are so busy, so overworked. I am focused on 1 patient. ME.
Whether you have cancer or not -- IF YOU ARE IN PAIN, YOUR DOC SHOULD ADDRESS THAT! If he/she does not -- you need another doc! I can't state that strongly enough! What you say, Kat, makes no sense. It is a totally inappropriate response to a person in need!
Being on diuretics you must watch your potassium #s. Kat in the Delta -- have you checked to see if yours are in the normal range????? I supplement w/potassium and am still low. So I eat a banana every single day and I have a glass of OJ every single day. You could choose to eat an orange instead. Both are high in potassium.
I take NADH (see thread referred to above -- or ask me) which improves energy and MENTAL ACUITY. It's amazing! The stuff really works. As do my immune boosters and other supplements. I am still here -- 12 yrs after initial dx and I believe my nut onc guru has contributed mightily to that!
When I am living in chaos (ie when I broke my ankle, had surgery and was in a cast, told not to put any weight on that foot for 3 mnths and to keep my ankle above my heart for that pd of time) is was horrid. I hear you! I was in physical pain. And psychic hell. I was aware of the mess, which my husband didn't notice and who was doing everything because I could do nothing. I went into a shut down mode. I hid. I had to. To survive. I looked the other way. Kat -- your 4 men should not be judging you, but supporting you and contributing as best they can to the house and your well-being. You deserve that! You've been through the wars, and you need your men to be respectful of that!
I know well the difference between getting out and doing what you have to and forcing yourself to do the littlest thing, like getting dressed, and then to lie down. If that's how you feel -- listen to your body. Be good to yourself. Be patient with yourself. Let your body recuperate, heal and be well. Be your own best friend. Do not take your fatigue as a sign of defeat. Your body is responding the trial and assault it's just undergone and is asking for your cooperation. Not unreasonable. DO NOT GIVE UP. DO NOT GIVE IN.
See a doc about some anti-depressant med. I was on Zoloft and it made me ME again. Now I'm on Effexor. It takes the edge off and allows the true you to blossom. We all need a little help a times. Nothing to be ashamed of.
Please know you can air your thoughts here any time and we all are willing to listen and can relate to your experience. We all want to help one another, support one another and lift one another up. We're here for you Kat. Sending you loving energy...
Andi 
Muga & echos dropped from Herceptin
Hey Kat! And All My Friends/sisters...
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